Momof4
Forum Replies Created
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As always, thanks Good Intentions for keeping us up to date on all things hernia. I am impressed with your research skills! You make it easy for all of us to read what’s new and relevant and I truly appreciate your efforts!
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Thanks @pinto! I know Dr. Towfigh and her team have done research and published on the topic of allergy testing for mesh allergies. I don’t think the tests are very reliable and have a high false negative rate. That being said, I had allergy testing before having polypropylene removed and I had a severe skin reaction. I also reacted to the hybrid with a polypropylene component. After removal and recurrent hernias you deal with in a few months time I was tested again. The allergist I saw close to home said something that I think summed it up pretty well. He said that skin testing for an implant isn’t reliable. If you react to something on the skin he certainly wouldn’t implant that material, but if you don’t react, that doesn’t mean you won’t react when the material is implanted! Like I said, we thought I wasn’t allergic to polyester so that was the implant used for recurrences. Now that I’m reacting to that mesh too it seems that I don’t have a pure allergy but a foreign body response too!
My best!
Susan -
Jon,
I hope you find the right surgeon for your situation. It is a very complex issue for sure. I’m wondering why you had a mesh removal recently and didn’t have the hernia repaired then. Was it not present at the time of removal? If you are pleased with Dr. Chen, why are you looking for another surgeon? If you had a problem with mesh the first time around I think you should be very careful about another mesh repair! I had polypropylene mesh removed due to reaction that was thought to be allergic in nature only. After 4 months and 4 new hernias, I had polyester mesh inserted and am having same, plus some, issues with this mesh. I have foreign body response in addition to allergies. You mention that you have psoriatic arthritis which is autoimmune in nature. I’m pretty sure someone with allergies and/or autoimmune disease should not have mesh implanted due to high risk of rejection or reaction. I agree with Herniahelper about Dr. Towfigh! She is the most comprehensive hernia specialist that I’ve seen and I’ve seen a lot of the top specialists! Also, if you have a problem, she will not abandon you until the problem is resolved! Best wishes on finding the right doctor for your current situation and keep us posted!
My Best,
Susan -
Great session, as usual! Thanks 😊🙏
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The not getting upset part is hard!! When I am in so much pain and don’t have a plan, it’s a struggle to keep going. I try to be positive and move forward and am fortunate to have a good support system! Dr. Martindale sounds like he will do his best to get you as healthy as possible! Best wishes and keep us up to date! Maybe someone can benefit from hearing your plan of care.
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The collaborative is now the Abdominal Core Health Quality Collaborative, ACHQC. There is no official form associated. The patient advocacy committee is discussing several topics for presentation at the Summit, which has been made totally virtual and spread out over several months. One of the topics to be discussed in June, by the Patient Advocacy Committee, is focused on the difference in physician vs patient success measures and expectations. Unfortunately, I have lots of experiences myself to go on but I would also like to hear other patients’ perspectives about their expectations for hernia surgery success. The standards used to measure success from a physician and patient viewpoint are very different. There is lots of good information on the ACHQC site and we are hoping to add even more information, but from the patient perspective. Thanks for your interest!
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Mamadunlop,
Oh no, I was hoping no news is good news. Hate to hear this. Dr. Martindale was a guest on HerniaTalk Live this week. It was a great session and he seems very dedicated to helping patients with comples hernia issues, like yours. Why are all the good doctors on the West Coast?!? Ajm asks a good question about whether you have been tested for connective tissue disorder. The only testing available is genetic testing which I’ve been told can be quite expensive and I’ve also been told that even if you test positive, there is nothing you can do to improve that situation. You will just know that you have a connective tissue disorder! Dr. Towfigh says she knows I have one from symptoms and also failure of multiple tissue repairs. I think it does matter what type of repair and mesh your body does best with if connective tissue disorder is known. None ever asked me about that before Dr. Towfigh. After going through my history, it was the first question she asked me! Have you tried seeing a plastic surgeon? Sometimes they deal with abdominal wall reconstruction and may have different ideas on ways to approach your problem. Dr. Martindale may be able to help with that. I am in the double digits with surgeries and I may need another mesh removal and new repair which would include a plastic surgeon along with a top hernia specialist! I’m going to see a plastic surgeon, who was a guest on HerniaTalk Live a couple of weeks ago. He is in VA only 4 hours away, which is nice. Hoping he can offer good advice on next step for me! Please message me if you’d like to talk. You are in my thoughts and prayers!! -
Fabulous as usual and on your birthday! What a gift HerniaTalk Live is to us. We are grateful for your help and the help of all your colleagues. Thanks to you we have Hope! 🥰
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Addressing your statement that there are probably some situations that won’t see improvement without intervention, someone having a reaction to the mesh is one of those situations. Your body is in a constant state of inflammation and, in my case, debilitating pain! I am happy for those that get resolution without intervention. Every subsequent surgery is harder to heal from. I’m hoping to get my final fix one day, when we can figure out the best solution for someone that is prone to mesh reaction AND recurrent hernias, due to collagen disorder. Dr. Towfigh is good at solving these problems!
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Once again, a very informative talk with 2 very knowledgeable experts! Thanks to Dr. Towfigh and Dr. Treyzon for taking time to help those of us who are suffering and looking for the best help. Your kindness shows that you truly care about your patients.
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It really was a fantastic and informative session, thank you! I really learned a lot pertaining to my situation and some of it helps me to make sense out of everything that is going on. I wish more doctors were on board! It really means a lot when a doctor really listens and believes what the patient is saying. We couldn’t make this stuff up, it’s real! Not only real but life changing! So, the question is … why is all the good help so far away??!!
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And thank you to Dr Szotek for the contribution and useful information!
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The informative tele-health appointment sounds like a good idea, it can’t hurt! Get as much information as possible before making a decision on surgery and mesh v non-mesh. Your quality of life may depend on it. Best wishes!
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I disagree with the statement that Polypropelene can’t be rejected! You can have an allergic reaction and/or foreign body response to mesh. I know because it has happened to me with 2 different materials, both synthetic. It has caused lots of suffering and health problems (still is)! Dr. Towfigh has offered her opinion and advice concerning such issues and also issues With mesh arising from existing autoimmune disease and allergies. Search the forum for more information. You need to know the true risks before deciding on a mesh repair. Wishing you the best outcome possible.
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Yes, I agree with the comment about cutting nerves. I had a Lap triple neurectomy and asked specifically if there were any side effects in addition to the numbness and was told none. Doctors and patients alike now know that is not the case. There is some motor component to those nerves, especially when the neurectomy is performed laparoscopically. It has caused significant laxity and bulging in that area!
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I know that a triple neurectomy causes laxity in abdominal wall. I was told no side effects besides sensory before I had it but told otherwise from Dr. Towfigh after the fact. I have bulging in the area.
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@drtowfigh, Thanks for the interesting session. Shouldice Hospital wouldn’t touch me with a 10 ft pole!! So, how do we get some of those stainless steel sutures?? No inflammatory response sounds great!! Thank you for keeping hernia patients educated.
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I would really love to hear more about Dr. Ramshaw’s pre-hab and rehab protocols. I would do everything I can to optimize my chance for a successful removal and
non- mesh repair! Any chance you have this info or any way to get it? Thank you for your time on HerniaTalk Live! I’ve enjoyed the discussions. -
@julian
Any way you can be evaluated by Dr. Towfigh? If anyone can help you, she can (speaking from experience!). -
Now the posts are up to 13 pages. Anyone else see this?